Blog: National Partnership for Action

Women's Health

We would all like to believe that where you are born does not determine or sentence your fate, but that’s only partially true. Birthplace can limit the care a newborn receives, the quality of nearby education or access to healthy food choices. Increasingly, researchers are also finding evidence of biological connections between early life experiences (including those inside the mother’s womb) and long-term health.

Last year, as I spent time conducting a research study on neonatal mortality in rural India and observing procedures at a tertiary-care hospital in the U.S., it became clear to me that the circumstances of one’s birth determines so much of what happens afterwards. As I walked through the neonatal intensive care unit listening to the beeping and hissing of machines that kept children who could fit into my palm alive, I was singularly aware of the great separation that exists after the moment of birth.

I was struck that the health of those babies is related to both the nutrition and stress levels of their mother while in the womb and access to health care once they are born. Many of the neonatal deaths I documented in rural India were attributable to factors linked to the types of stressors that preconception care tries to address.

This summer, during my internship with the Office of Minority Health Resource Center, I’ve written and edited resources for the Peer Preconception Educators program (PPE). The program seeks to train college students as peer educators on topics related to preconception health.

Preconception health care helps women and men take steps during their reproductive years to protect the health of a baby they might have in the future. Critically, it fills the gap between conception and access to prenatal care. Nearly one-fifth of pregnant women who give birth in the U.S. don’t receive prenatal care before the end of the first trimester, a figure that jumps to over a quarter for minority groups such as African Americans, Latinas and American Indians. Yet by that time, most of the developing fetus’ major organs have already formed. It also misses a critical window between four and 10 weeks of pregnancy when the fetus is most sensitive to maternal conditions and environmental exposures.

The Affordable Care Act (ACA) has recently offered new opportunities for preconception care. In addition to requirements that health insurance plans must cover women’s preventative services, at least one well-woman preventive health visit is covered annually, which includes preconception care. Other highlighted services include screening for gestational diabetes, testing and counseling for HIV, and screening and counseling for domestic violence. All are key components of the PPE curriculum and critical services for women’s health.

If we truly want to talk about ending health disparities, reducing infant mortality rates or giving every child in this country the same opportunity to be all that they can be, we need to actively promote preconception care. After all, why should circumstances before and during birth determine a person’s future?

Lupus is a devastating autoimmune disease that disproportionately affects women and people of color. Patients currently spend an average of four years and see three different physicians before this complex disease is correctly diagnosed. But with knowledge comes hope and, at an event in Washington, D.C. on May 16, 2013, the American College of Rheumatology's Lupus Initiative, supported by the U.S. Office of Minority Health, launched a free curriculum for health professionals and schools across disciplines to recognize the signs and symptoms of lupus to improve outcomes and reduce health disparities. Brenda Blackmon, a multi-Emmy winning New York journalist and co-anchor of WWOR's My9 10 o'clock news, moderated the launch event and shares her story of how her daughter, Kelly, was diagnosed with lupus. In 2008, Blackmon founded The Kelly Fund for Lupus, a non-profit organization to promote awareness and understanding of the disease, with emphasis on women of color.

Imagine sitting bedside in the Intensive Care Unit. A doctor walks over to you and says, "Your daughter is going to die. There's nothing more we can do. You need to give us permission to disconnect the respirator."

This scene is supposed to come from a movie. It could be a news story I read on the newscast any night of the week. But this was my life. The person in the bed connected to a respirator was MY daughter. And it was my turn to ask God to take my life instead of hers because I refuse to be in denial about this awful disease called lupus anymore. I now knew it could be life-threatening. And I was determined it was not going to take my child's life. After all, she just had a rash, some weight loss, a little fatigue, symptoms typical of college girls who work hard to achieve. She was going to law school. She was not going to succumb to this disease.

That was June 2007. It doesn't seem so long ago. I still anchor the news in New York. My daughter Kelly is back to what seems like a normal life. The doctors call her, "A miracle". She cannot run or wear very high heel shoes, but considering she couldn't walk at all for nearly two years, she's doing quite well. She couldn't speak at all and now she speaks before audiences about a disease that attacked her brain and nearly took her life. She doesn't remember the 52 days in ICU or much of the six months in rehabilitation. She does remember the wheelchair and walker and varied colored canes.

Lupus took more than a year of her young life. It's not the same for everyone. I've learned that through educating myself and stopping the denial. Now I am determined to educate others everywhere, especially in minority communities where it is whispered about or not discussed at all. Lupus affects an individual but it also affects families and friends too. And I wasn't the only one who didn't know a lot about lupus. Neither did many responsible for Kelly's care. Talk of harvesting her organs, doctors running out of options, and finally the realization and review of her case with this conclusion: Every lupus patient is unique in diagnosis and treatment. And, all patients, regardless of their disease, race, ethnicity, or social status should be able to get access to the right information they need for their care and treatment, which is why initiatives such as this lupus curriculum and The National Standards for Culturally and Linguistically Appropriate Services in Health and Health Care are so important.

I founded The Kelly Fund for Lupus, Inc., a 501c (3) organization that supports, serves and educates people living with lupus. And Kelly found a new purpose for her life. She first spoke about it to a group of young people at one of The Kelly Fund events. Here's an excerpt:

"I've learned to look at my lupus diagnosis as my teacher, and I know that this is a never-ending class.
My teacher shows up whether I want her to or not. The purpose of life is simply to live a life of purpose. Lupus education is my purpose. Lesson 1: When I'm trying to achieve something there are no limits, only expectations. Lesson 2: When you expect to do more, you will. Lesson 3: There will always be naysayers, defy the odds, surprise them. Lesson 4: Your true purpose prevails over any problem so remember you are one step away from using your gift on a higher platform."

Kelly took over as President of The Kelly Fund for Lupus last fall. She completed an Executive Philanthropy non-profit leadership training program.

Kelly and I both have a new purpose for our lives -finding a cure for lupus, no more denial.

About the Blog

The NPA works to achieve health equity -- the highest level of health for all people. This blog is a venue for professionals from all fields and sectors to share their thoughts on pressing issues, news and events pertaining to health equity. Follow and participate in this candid discussion.